Rare Diseases and Employment Challenges


We are excited to bring you another in our series of blogs by our Intern Afsoon Movahed. Afsoon was able to interview Dana Lockwood, an adult with HH, and share his experiences with seeking job employment.

Today’s blog is both a point of view for some and a guide for others, on employment with a disability. Dana Lockwood, an HH survivor, has been kind enough to share with us his 13 years of experience. At the end of this blog, you can find resources for individuals with disabilities seeking employment. 

Q&A with Dana Lockwood

Any quirks or life-changing experiences you would like to share?

I suppose the life-changing experience that I would like to share for this was having laser ablation surgery that completely removed my hypothalamic hamartoma (HH) in 2013. I have since been entirely seizure-free and off medications. 

How was your experience with your first job?

My first job was a simple dishwashing job that I just had for the summer in between school years. It sucked because it was dishwashing at a restaurant.

How has your HH affected your work experience?

These days, I am still trying to get a job, because my new vocation is in a highly competitive industry. Back when I did have seizures, it certainly made work very difficult. I didn’t know when even a simple, minor seizure (or “aura”, as they’re sometimes called) would happen, and it would be quite disruptive when they did.

Have you ever had one particularly bad experience in the workplace?

There was one day, years ago when I was working in retail sales, where I had to leave work because I was experiencing particularly bad partial complex seizures. I have (fortunately) not yet faced any discrimination or harassment as a result of having a seizure disorder.

What has been the most challenging aspect of employment?

For me, the most difficult part of job hunting has been compensating for my lack of professional experience in a highly competitive industry. I guess I’m currently trying to compensate by building up a portfolio of work to show employers.

Did you ever choose not to disclose information about yourself in fear of not getting the job?

There have been times where I have not disclosed having epilepsy out of fear of not getting hired for a job.

Intern Afsoon Movahed

Hello everyone, my name is Afsoon Movahed. I am an intern for Hope for Hypothalamic Hamartomas. I learned a lot by writing this blog and I hope you can take something out of it too.

Finding employment is no easy task for anyone, disability or no disability. Sometimes we need a little help.  Just hearing the experiences of others can serve as help enough for some, but the links below may be more helpful for others.  

If you are contemplating whether or not to disclose epilepsy to the employer, click here.

The Americans with Disabilities Act includes persons with epilepsy and seizure disorders. This means you are entitled to reasonable accommodations in the workplace and no employer can neglect you on the basis of disability, click here.

For those looking for resources internationally, the EURORDIS organization can provide guidance and resources.

If you are struggling to find employment with your specific circumstances, use this link for help and job hunting resources:

Hope for HH would like to thank Dana Lockwood for sharing his experiences with seeking job employment. If you are an adult with HH and would like to share your story, we would love to hear from you! Complete this form and let us know you’re ready to share your story.

Your story can help others learn how to be successful or perhaps not feel so alone in the struggles that you may be facing in a competitive job market. Hope for HH and indeed the entire HH community would like to better understand the issues adults with HH face in all aspects of their daily lives.

If you have an issue or concern you would like us to address with our network of professionals, medical advisory board, or other resources – you can reach out to Lisa Soeby at lsoeby@hopeforhh.org!